Sometimes no news is not necessarily good news. While Graham is not moving any steps backwards, it seems he is no longer moving forward to better health - stalemate. He had 2 great breathing days last week; things actually started looking up. On Thursday, he was moving around, out of the bedroom, and overall in a great mood! He might have overworked himself because Friday, he was EXHAUSTED, but his breathing was still great. Everything went back to "normal" on Saturday. Horrible headaches, hard to move without being breathless, tired and no appetite. We have never heard of the side effects of Photopheresis, maybe this (along with antibiotics) is what they are?
If this is our "new normal," great - I'll take this over dead ANYDAY! And I won't complain (Graham might though). However, there are all these great statistics for Photopheresis, why can't they happen for Graham? He has completed 6 treatments in 2 weeks, we were hoping he would start to feel better. He is done with his IV antibiotics on October 1st, fingers crossed he'll feel better soon after.
I went to my doctor today and as I was telling her about our past 2 months she made a comment that I have never heard before, "For every day you are down, it takes 2-3 days to recover." Well, if he is "recovering" from the 16 days of hell he went through, then maybe this is normal for now, and things will finally start moving forward soon. Well, if you do the math, 32-48 days from now. But I'll still take it!
I go back to work tomorrow. I have so many emotions running through me. I am leaving Graham for the 1st day in 3 weeks. I fully believe he is at a point that he'll be fine. He knows he'll be fine, but I'm still nervous. And on the other side...I am lucky enough to LOVE my job. I miss all my friends at work and I MISS my students; I'm very excited to see them tomorrow. It's as if it is my first day of school and all the back to school jitters are alive and well within me. I'm sure I will supply many people of some unplanned comic relief tomorrow. Ugh.
Monday, September 28, 2015
Thursday, September 24, 2015
Not much change
We have our routine down pat...as long as we have all of our supplies. There are so many people out there who could really benefit some elementary math skills, I'll be happy to tutor them. Question: If you send out 21 IV bags and each of the tubings is a single use only. How many IV tubings should you have? Answer = 21; NOT 16. But that's over with.
It is still difficult for Graham to do much on his own. Not only is he very weak, but he runs out of breath doing everything (walking to and from the bathroom, talking, even eating - one of his favorite things to do). So he just lays in bed, conserving his energy to talk and eat and occasionally go to the bathroom. I still refuse to allow him to use a bedside urinal; the man has got to have some exercise! The IVs are pretty constant (morning, noon and night); therefore it's scary for me to think of leaving him for work. But I do have to go back sometime. The plan is to work a couple of days next week. I'll have him completely set up so that he'll be fine for 9 hours without me. His last day of IVs is October 1st - and then I might get to go back permanently!!! And even better, he might get to go back to work! We really miss our work; he loves keeping busy and talking to others, I miss my students and my friends at work.
Graham started his 5th Photopheresis treatment today. He has been looking forward to this. He really hasn't felt any different and he's really wanting this to work out. They say some people feel the effects after 2 weeks. This will be his 3rd, hopefully he starts to feel a little better.
It is still difficult for Graham to do much on his own. Not only is he very weak, but he runs out of breath doing everything (walking to and from the bathroom, talking, even eating - one of his favorite things to do). So he just lays in bed, conserving his energy to talk and eat and occasionally go to the bathroom. I still refuse to allow him to use a bedside urinal; the man has got to have some exercise! The IVs are pretty constant (morning, noon and night); therefore it's scary for me to think of leaving him for work. But I do have to go back sometime. The plan is to work a couple of days next week. I'll have him completely set up so that he'll be fine for 9 hours without me. His last day of IVs is October 1st - and then I might get to go back permanently!!! And even better, he might get to go back to work! We really miss our work; he loves keeping busy and talking to others, I miss my students and my friends at work.
Graham started his 5th Photopheresis treatment today. He has been looking forward to this. He really hasn't felt any different and he's really wanting this to work out. They say some people feel the effects after 2 weeks. This will be his 3rd, hopefully he starts to feel a little better.
Monday, September 21, 2015
Home
Friday was a beautiful day. Just 2 weeks ago, Graham was dying. His body stopped breathing and the fear of losing him was a reality, not a some day this will happen. And here he is, defying odds like he always does and is coming home. When I asked him if he thought he'd ever be doing this, he replied, "No, I never thought I would see home again."
To better explain the sign, no, I'm not pregnant, Graham's donor lungs are from a very gracious woman who unfortunately did not need them anymore.
Home was not all rainbows and butterflies. It was very difficult, almost questioning if this was the right move. Graham was flustered and stressed with the commotion of his family and dog; this raised his heart rate and blood pressure which effects his breathing. He tried to take everything on himself. He was trying to do all his meds, IVs, and making his meals all alone. I don't know if he was wanting to do this, to prove he could or he didn't trust me, believing I was inept of it all. Pretty sure it was the latter. To say he struggled and was frustrated was an understatement. Saturday was so difficult, I didn't see this working out and neither us never able to return to work anytime soon.
Come Sunday, I finally convinced him he can't do it all. If he wanted to make it to Jordan's game, he had to allow me to help him and he had to just deal with it. Needless to say, he caved and we made it to the game. Getting outside was definitely good medicine for his psyche. And by the end of the night, he was VERY tired, but in a much better place than the previous night. We have made it into a routine already and I have this IV thing down. Since it's Halloween season - maybe I should go find one of those nurse's outfits!
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| This is our front yard - very fitting for a Welcome Home for Graham. Thank you Janie!!! |
Home was not all rainbows and butterflies. It was very difficult, almost questioning if this was the right move. Graham was flustered and stressed with the commotion of his family and dog; this raised his heart rate and blood pressure which effects his breathing. He tried to take everything on himself. He was trying to do all his meds, IVs, and making his meals all alone. I don't know if he was wanting to do this, to prove he could or he didn't trust me, believing I was inept of it all. Pretty sure it was the latter. To say he struggled and was frustrated was an understatement. Saturday was so difficult, I didn't see this working out and neither us never able to return to work anytime soon.
Come Sunday, I finally convinced him he can't do it all. If he wanted to make it to Jordan's game, he had to allow me to help him and he had to just deal with it. Needless to say, he caved and we made it to the game. Getting outside was definitely good medicine for his psyche. And by the end of the night, he was VERY tired, but in a much better place than the previous night. We have made it into a routine already and I have this IV thing down. Since it's Halloween season - maybe I should go find one of those nurse's outfits!
Friday, September 18, 2015
Baby steps forward
AND HE HAS GROIN ACCESS!!! This is great news; this is the factor that UT Southwestern put in place for their Tranplant Team to consider Graham for a 2nd transplant. The lead surgeon was on the original transplant team, so he is familiar with Graham's case. Plus, Barbara - Graham's Mom- made a great contact with some of the surgeons over there too. Though this means nothing but another chance for discussion, it is still another chance.
Graham has a 99% chance of coming home today! After his Photopheresis treatment they will do blood work, and as long as everything looks good, my Babe is coming home!!!
Graham has a 99% chance of coming home today! After his Photopheresis treatment they will do blood work, and as long as everything looks good, my Babe is coming home!!!
Wednesday, September 16, 2015
Innocent until proven guilty...
So I might have jumped the "impeachment" gun on Dr. Rosenblatt. The trial is still in session, so I'm not taking sides right now. However, Dr. Rosenblatt finally graced Graham with his presence last night, and it was hopeful news he brought.
Apparently Dr. Rosenblatt has not taken NO as an answer. His current mission in life (well, this week) is to convince the lead surgeon at Baylor, Dr. Mason, to go ahead and grant Graham a 2nd transplant. Just this news alone was a huge weight off our shoulders. But there is more; he has already spoken to a surgeon over a UT Southwestern about Graham's case and IF there is vascular access through Graham's groin, they will bring him up for discussion at their transplant meeting. Graham went in for a sonogram this evening. But wait, there is still more...Dr. Rosenblatt plans on calling Houston Methodist to discuss his case with them too.
Though we REALLY want the Photopheresis to work, transplant IS very scary; it is nice to know that if it doesn't, there is still a chance that he might live on.
Please continue praying and sending positive vibes Graham's way; they are really working. We are forever grateful for them.
Annnnddddd, if anyone knows ANYONE on any of these hospital medical boards...a kind word (or give me their number) always goes a long way :)
Apparently Dr. Rosenblatt has not taken NO as an answer. His current mission in life (well, this week) is to convince the lead surgeon at Baylor, Dr. Mason, to go ahead and grant Graham a 2nd transplant. Just this news alone was a huge weight off our shoulders. But there is more; he has already spoken to a surgeon over a UT Southwestern about Graham's case and IF there is vascular access through Graham's groin, they will bring him up for discussion at their transplant meeting. Graham went in for a sonogram this evening. But wait, there is still more...Dr. Rosenblatt plans on calling Houston Methodist to discuss his case with them too.
Though we REALLY want the Photopheresis to work, transplant IS very scary; it is nice to know that if it doesn't, there is still a chance that he might live on.
Please continue praying and sending positive vibes Graham's way; they are really working. We are forever grateful for them.
Annnnddddd, if anyone knows ANYONE on any of these hospital medical boards...a kind word (or give me their number) always goes a long way :)
Tuesday, September 15, 2015
A Little Nervous
Graham has the potential of coming home on Friday!!! We are so excited for a home coming, but nervous at how well he will do. When I say nervous, I mean scared. It's kind of like when you have your first child and you are able to take them home and then it's like, "Ummmmm, now what? What do I do?"
I've started humming the Darth Vader Death March every time the doctor or nurse practitioner walks into the room. They never have anything good to say, and it all revolves around Graham's decline or death. Have they not been witnessing the odds he has beaten in just the past 2 weeks?!?!?!?! But Dr. G actually had ok news today - the x-ray of his lungs showed that the infection is clearing up. That means the antibiotics are working! Now, it will never be all gone, because apparently the infection he has is resistant to all meds, but at least it is clearing a little.
He has also been feeling the side effects of "hypoxia;" this is when your body is deprived of a certain amount of oxygen. He has PLENTY of O2, but since he has been on such a high liter of O2, he has a fear of being without it. He is suffering from pressure headaches, tight chested anxiety, and will all of a sudden begin gasping for air. His O2 sats say he's fine, therefore it is all mental. Some people get over it (typically mountain climbers), some don't (typically pilots - good luck JT). I believe Graham is strong enough to get over this fear. It comes and goes and it is not very consistent - I know he can do it.
He is also still "junkie" in his lungs. The doctor is actually putting him back on hypertonic saline. This brings back sooooo many memories. This was the "miracle drug" of the 2000s for Cystic Fibrosis patients. An Australian doctor figured out his beach bum CF patients were doing a lot better than his regular Joe CF patients and he found that it was the breeze coming off the ocean salt water. So, enter hypertonic "beach air" saline. This should help the gunk in his lungs break up better.
Like I said before, there has been nothing but Doom and Gloom coming into room 1032, but today his Transplant Coordinator Tammie came to visit us. She was so happy to see how well Graham looked and began telling us about other Transplant patients. Specifically about a CF girl. She was 6-8 years out of transplant when she began rejecting. She was also denied another set of lungs because of her circulatory system. Hers is actually worse, she ONLY has access to her veins through her one port, Graham should have more than this. This girl (obviously she didn't say names - go HIPAA!) has also been under Rosenblatt's care for quite sometime and she has been successfully living off Photopheresis for SEVERAL years! Now we can read all the literature we want, but until we have a real story, it's hard to fully believe. We literally began smiling. Graham is NOT a clapper and he hates that I am, so I just mentally began jumping and clapping. I'm a sucker for happy stories. Tammie also began telling us all the success stories she has of this new anti-rejection med they have put Graham on. This drug, which I have forgotten the name, is used on patients for when they begin to reject. The side effects are much more prominent and it takes longer to see blood levels which is why it is a last resort med. But apparently in the Baylor Heart and Lung Transplant Clinic, there are many patients who have gone on for years on this med while in rejection - one patient in particular was MUCH worse off than Graham and actually saw improvements. Insert mental jump and clap.
Though we want Graham to be better than he is, it will be nice to have him home. I will continue to stay home to make sure he is able to do the little things. It is still a chore for him to go to and from the bathroom in his tiny little hospital room, so our house worries me. And if necessary I will bust out my Danika Kirkpatrick skills and take him right back to Baylor.
I've started humming the Darth Vader Death March every time the doctor or nurse practitioner walks into the room. They never have anything good to say, and it all revolves around Graham's decline or death. Have they not been witnessing the odds he has beaten in just the past 2 weeks?!?!?!?! But Dr. G actually had ok news today - the x-ray of his lungs showed that the infection is clearing up. That means the antibiotics are working! Now, it will never be all gone, because apparently the infection he has is resistant to all meds, but at least it is clearing a little.
He has also been feeling the side effects of "hypoxia;" this is when your body is deprived of a certain amount of oxygen. He has PLENTY of O2, but since he has been on such a high liter of O2, he has a fear of being without it. He is suffering from pressure headaches, tight chested anxiety, and will all of a sudden begin gasping for air. His O2 sats say he's fine, therefore it is all mental. Some people get over it (typically mountain climbers), some don't (typically pilots - good luck JT). I believe Graham is strong enough to get over this fear. It comes and goes and it is not very consistent - I know he can do it.
He is also still "junkie" in his lungs. The doctor is actually putting him back on hypertonic saline. This brings back sooooo many memories. This was the "miracle drug" of the 2000s for Cystic Fibrosis patients. An Australian doctor figured out his beach bum CF patients were doing a lot better than his regular Joe CF patients and he found that it was the breeze coming off the ocean salt water. So, enter hypertonic "beach air" saline. This should help the gunk in his lungs break up better.
Like I said before, there has been nothing but Doom and Gloom coming into room 1032, but today his Transplant Coordinator Tammie came to visit us. She was so happy to see how well Graham looked and began telling us about other Transplant patients. Specifically about a CF girl. She was 6-8 years out of transplant when she began rejecting. She was also denied another set of lungs because of her circulatory system. Hers is actually worse, she ONLY has access to her veins through her one port, Graham should have more than this. This girl (obviously she didn't say names - go HIPAA!) has also been under Rosenblatt's care for quite sometime and she has been successfully living off Photopheresis for SEVERAL years! Now we can read all the literature we want, but until we have a real story, it's hard to fully believe. We literally began smiling. Graham is NOT a clapper and he hates that I am, so I just mentally began jumping and clapping. I'm a sucker for happy stories. Tammie also began telling us all the success stories she has of this new anti-rejection med they have put Graham on. This drug, which I have forgotten the name, is used on patients for when they begin to reject. The side effects are much more prominent and it takes longer to see blood levels which is why it is a last resort med. But apparently in the Baylor Heart and Lung Transplant Clinic, there are many patients who have gone on for years on this med while in rejection - one patient in particular was MUCH worse off than Graham and actually saw improvements. Insert mental jump and clap.
Though we want Graham to be better than he is, it will be nice to have him home. I will continue to stay home to make sure he is able to do the little things. It is still a chore for him to go to and from the bathroom in his tiny little hospital room, so our house worries me. And if necessary I will bust out my Danika Kirkpatrick skills and take him right back to Baylor.
Monday, September 14, 2015
I think I just smiled...
On Thursday of last week I made a goal; if Graham stayed in a stable state, I would go home and try to return to some normalcy, for Jordan's sake. Graham has stayed fairly stable since Wednesday. His heart rate has not increased since doom's day, his blood pressure is remotely normal for him, and his breathing may be the same, but he is now down to 2-3 liters of oxygen instead of 5-6 liters. While he is very tired (there is no rest for the sick in a hospital), he has been feeling fine.
So Sunday came. As I was leaving the hospital to go to Jordan's soccer game (which was conveniently in Dallas) I caught myself smiling in the car. No one was telling me a joke or a funny Graham story, there are A LOT of those gems. And though I was excited to see Jordan and see her play soccer, it wasn't that. I was truly happy on the inside. It may have been short lived, but it was a nice feeling.
A dear friend had arm bands made for Jordan and her girls. They are green (for transplant) and purple (for Cystic Fibrosis). The girls played in honor of Jordan's Daddy yesterday, it was such a beautiful day. Graham had asked her, "Score a goal for me!" and by golly - Jordan was hell bent and she scored the only goal for her team! So proud of our girl. We came back to the hospital after the game and Jordan told Graham all about her big day. He was a proud Dad.
So Sunday came. As I was leaving the hospital to go to Jordan's soccer game (which was conveniently in Dallas) I caught myself smiling in the car. No one was telling me a joke or a funny Graham story, there are A LOT of those gems. And though I was excited to see Jordan and see her play soccer, it wasn't that. I was truly happy on the inside. It may have been short lived, but it was a nice feeling.
A dear friend had arm bands made for Jordan and her girls. They are green (for transplant) and purple (for Cystic Fibrosis). The girls played in honor of Jordan's Daddy yesterday, it was such a beautiful day. Graham had asked her, "Score a goal for me!" and by golly - Jordan was hell bent and she scored the only goal for her team! So proud of our girl. We came back to the hospital after the game and Jordan told Graham all about her big day. He was a proud Dad.
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| Sporting their arm bands |
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| Playing for Daddy! |
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| Jordan's Goal for Daddy - it's a little blurry, she is the white blob on the left, hehehe. |
I got to sleep in my own bed last night and both our cat and dog did not leave my side, I think they missed me. I was very anxious leaving Graham for the night. It seems the few times I have, the next day would be horrible.
Today is a rough day. Not as bad as previous days, but he feels out of it and "junkie." They will be ordering another chest x-ray to see if something else is going on. He has started another anti-rejection medicine, but how he feels is not any of the side effects. I did make him exercise yesterday...maybe he's just a little exhausted.
Saturday, September 12, 2015
Another one bites the dust
Graham has successfully completed 2 photopheresis treatments. Friday's treatment was a WHOLE lot less painful. He already knew it was going to hurt so he was prepared this time. He reassumed the death grip on my hand right before the nurse began inserting the needle, and though as he was squeezing he asked why she stopped; "Oh, I'm done!" Jeanette (the nurse) had to of thought we were crazy with the dumbstruck stares we were giving her. Graham explained to her that it didn't hurt anywhere near as bad as yesterday. She gave some excuses, but we all knew, the nurse yesterday made it a point to make it hurt - UGH.
Here is the INSIDE of needle - the picture does this sucker no justice. It is as long as my boney pinky and fatter than a tire or ball pump needle. Now the actual needle is longer and fatter and that is why they have to use so much "leverage" to get the big ol' needle in.
Beginning the treatment might not have been as painful, but the actual treatment was more draining on Friday. How the process works...the machine pulls about a pint of blood out at a time and treats the white blood cells. The computer does all the thinking, so it isn't a consistent amount of time for each pint, depends on how long the computer would like to zap the cells. Once done, his treated cells are rejoined with his blood and slowly returned to his body. As this is happening, another pint is leaving his body. So at any given point during this 2 to 3 hour process, he is down about a pint to pint and a half of blood. He feels cold, tingly, and just plain crummy/weird. My Mom made the funniest analogy - it's like a vampire didn't like their food and they are sending it back- hahaha. Could be? |
| But there is a TV to keep him entertained...Who doesn't love Shaun the Sheep???? |
It has been a long week full of ups and downs. Even though we are still angry with the decision that was made, we are calmly trying to find resolutions. First step though, get through treatments and PRAY they work. We have missed our daughter TERRIBLY so we had her pack her bags and come up for a sleepover. Be prepared to have your heart melted in
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Thursday, September 10, 2015
IMPEACH ROSENBLATT
If I were to ask you, "what is your quality of life?", what would you say? Would it be fair if I answered that question for you? Or, how about someone you have NEVER met makes that decision after reading some "facts" about you? Who do you think has the right to say if your life is worth living or not? Apparently a team of doctors and surgeons and 1 rather annoying nurse practitioner.
As I said earlier in the week, the transplant team was going to meet and talk about Graham and see if he would be a candidate for a 2nd transplant. Graham has 3 concerns that were brought against him: 1) He has drug resistant bacteria in his lungs (which he had during the past transplant) - so next, move on....2) His circulatory system on his left side is completely blocked (again, this was there the 1st go round) - moving on...3) His aggressive and quick rejection has no "research" or "known success rates." So they decided, that if they do a 2nd transplant on Graham, the chances of him coming off the vent would be low and he'd die within a year...this would be a "bad quality of life."
Graham's current quality of life in 1 year...dead.
So YOU TELL ME - what quality of life you are looking for Mr. Drs? A life that you decided wasn't worth a shot at? A life that you believe that one would rather sit in a morphine state and wait to die than go out with a fight? BS! I know for a fact that you have given transplants to patients that have an even slimmer chance of living. I know that you have transplanted patients that have already lived full lives and raised their children and walked their daughters down the aisle, and they didn't make it because their bodies gave out. I would love for them to look at my daughter in her eyes and tell her that her Daddy's life if not worth another shot.
OH...But on the news tonight, congratulations Baylor, you successfully transplanted 15 patients in 1 day.
As I said earlier in the week, the transplant team was going to meet and talk about Graham and see if he would be a candidate for a 2nd transplant. Graham has 3 concerns that were brought against him: 1) He has drug resistant bacteria in his lungs (which he had during the past transplant) - so next, move on....2) His circulatory system on his left side is completely blocked (again, this was there the 1st go round) - moving on...3) His aggressive and quick rejection has no "research" or "known success rates." So they decided, that if they do a 2nd transplant on Graham, the chances of him coming off the vent would be low and he'd die within a year...this would be a "bad quality of life."
Graham's current quality of life in 1 year...dead.
So YOU TELL ME - what quality of life you are looking for Mr. Drs? A life that you decided wasn't worth a shot at? A life that you believe that one would rather sit in a morphine state and wait to die than go out with a fight? BS! I know for a fact that you have given transplants to patients that have an even slimmer chance of living. I know that you have transplanted patients that have already lived full lives and raised their children and walked their daughters down the aisle, and they didn't make it because their bodies gave out. I would love for them to look at my daughter in her eyes and tell her that her Daddy's life if not worth another shot.
OH...But on the news tonight, congratulations Baylor, you successfully transplanted 15 patients in 1 day.
First Photopheresis
Well it happened...and it was quite an experience. We get down to the lab and there is a long row of beds with all this equipment next to them. Picture a comfortable morgue. The nurse tried to forewarn Graham of what was about to happen to him, but I don't think he could have ever prepared himself for this. Let me just start out saying, Graham has a HIGH tolerance for pain. I mean, there really wasn't much complaining after transplant where they cut you open, crack your ribs, take out some lungs and put more in. All he would say was that he was "uncomfortable."
So the nurse gets out this needle that, I kid you not, is not much smaller than the meat thermometer you use on a turkey. Graham's eyeballs almost popped out of his head. Next thing I know, I'm up and running to hold his hand and lord have mercy he has a strong grip. His feet could not stop wiggling and he went from a nice olive skin tone to being camouflaged with the white sheet. The Nurse had to shove with a LOT of pressure, this big old needle through his skin and port, straight to the catheter. Graham's pain level was a perfect unhappy face 10. I felt so bad for him. He said he literally went to another realm of mind and spirit. First pain, then nausea, then a tingly cold feeling; he decided to just be still and get through it.
This is when I realized just how funny God's sense of humor is. The master match maker made sure he put a hemophobic (fear of blood) girl with a chronically ill boy. Today, this girl had to watch blood being cycled out of her boy. I didn't pass out, but I almost did; and I kept my cookies, though dry heaving was involved. But I made it without a single code purple! Here are these 4 men and 1 woman getting these big ass needles put in them and feeling cold and tingly, and I'm over on Graham's bed, healthy, but shaking and moaning. Such a funny God!
Graham is feeling well this evening. And no, it's not from the treatment; that will take a couple of weeks. But we are now working on 2 days of normal heart rate, normal blood pressure, and normal eating. He still can't get up and move, but going to the bathroom or getting up to wash his hands is no longer a painful chore.
I know he is dreading that needle tomorrow - poor guy!
So the nurse gets out this needle that, I kid you not, is not much smaller than the meat thermometer you use on a turkey. Graham's eyeballs almost popped out of his head. Next thing I know, I'm up and running to hold his hand and lord have mercy he has a strong grip. His feet could not stop wiggling and he went from a nice olive skin tone to being camouflaged with the white sheet. The Nurse had to shove with a LOT of pressure, this big old needle through his skin and port, straight to the catheter. Graham's pain level was a perfect unhappy face 10. I felt so bad for him. He said he literally went to another realm of mind and spirit. First pain, then nausea, then a tingly cold feeling; he decided to just be still and get through it.
This is when I realized just how funny God's sense of humor is. The master match maker made sure he put a hemophobic (fear of blood) girl with a chronically ill boy. Today, this girl had to watch blood being cycled out of her boy. I didn't pass out, but I almost did; and I kept my cookies, though dry heaving was involved. But I made it without a single code purple! Here are these 4 men and 1 woman getting these big ass needles put in them and feeling cold and tingly, and I'm over on Graham's bed, healthy, but shaking and moaning. Such a funny God!
Graham is feeling well this evening. And no, it's not from the treatment; that will take a couple of weeks. But we are now working on 2 days of normal heart rate, normal blood pressure, and normal eating. He still can't get up and move, but going to the bathroom or getting up to wash his hands is no longer a painful chore.
I know he is dreading that needle tomorrow - poor guy!
Rosenblatt for President
Dr. Rosenblatt has been Graham's Primary Care, CF, and Transplant physician for 20 - 25 years. Graham has followed him from Presbyterian Hospital (where they use to house the cystic fibrosis kiddos) to St. Paul to Baylor. So to say there isn't a tight relationship is an understatement. Dr. Rosenblatt is not only the big dog for all Heart and Lung Transplant patients in North Texas, he is also one of the leading doctors in America for Heart and Lungs. This means he travels a lot and leaves his team of doctors to handle his patients at home in Dallas. These doctors are highly qualified, don't get me wrong; but there is not a strong bond like Rosenblatt and Graham have. So the pushing and fighting are not necessarily there.
Dr. Rosenblatt is the one who went to the IR Lab and raised some hell and Graham was immediately dealt with for his Catheter and Port. Then Rosenblatt goes back out of town and no one will push to start Photopheresis. Well, King Rosenblatt is back....
Graham will be starting his treatments for rejection today!!! Any hour now he'll be traveling down to the Pheresis Lab to get this ball going. This is NOT an immediate fix by all means. The way we have been describing is it is kind of the same process as Dialysis. He will go in 2 or 3 times a week for 6 to 8 weeks and it will taper off from there. This process will slowly build up his white blood cells so that they may fight off this rejection. While it is not immediate and today is not a life saving procedure, it is the beginning of one.
I asked Graham last night how he felt. He told me it will work, he has no doubt in his mind. I may have grown up trusting everyone, even the creepy man in the van with candy, but he has taught me strength and perseverance. And that is who he is, who we are. He fully knows and believes he is going no where soon. Makes my heart happy.
He has now eaten every meal since lunch yesterday too. Medicine and prayers are working.
The Transplant Team meets today and Graham is on the docket to be discussed. All tests are in and now it is in the Doctors and Surgeons hands. We will find out today or tomorrow if they will grant him a 2nd transplant. Please pray, think, or meditate that this happens.
Dr. Rosenblatt is the one who went to the IR Lab and raised some hell and Graham was immediately dealt with for his Catheter and Port. Then Rosenblatt goes back out of town and no one will push to start Photopheresis. Well, King Rosenblatt is back....
Graham will be starting his treatments for rejection today!!! Any hour now he'll be traveling down to the Pheresis Lab to get this ball going. This is NOT an immediate fix by all means. The way we have been describing is it is kind of the same process as Dialysis. He will go in 2 or 3 times a week for 6 to 8 weeks and it will taper off from there. This process will slowly build up his white blood cells so that they may fight off this rejection. While it is not immediate and today is not a life saving procedure, it is the beginning of one.
I asked Graham last night how he felt. He told me it will work, he has no doubt in his mind. I may have grown up trusting everyone, even the creepy man in the van with candy, but he has taught me strength and perseverance. And that is who he is, who we are. He fully knows and believes he is going no where soon. Makes my heart happy.
He has now eaten every meal since lunch yesterday too. Medicine and prayers are working.
The Transplant Team meets today and Graham is on the docket to be discussed. All tests are in and now it is in the Doctors and Surgeons hands. We will find out today or tomorrow if they will grant him a 2nd transplant. Please pray, think, or meditate that this happens.
Wednesday, September 9, 2015
Eternal Optimist
I have been accused numerous times of "living in an ivory tower" and this has never bothered me. I always see the good in people, even when the person can do no right; and I always think things will change for the better, even when the light at the end of the tunnel is very dim. I am pretty sure, that even if I were staring down the barrel of a gun, I would be conjuring up different options for that bullet - the gun could jam or I have some pretty fabulous cat like reflexes too. The fact of the matter is, I have ALWAYS had and WILL ALWAYS have hope that everything will be alright.
Yesterday we did not receive good news. At this point in time, the Doctors do not believe there is anything they can do for Graham. They are unsure if the Photopheresis will be effective on the type of aggressive and quick rejection that he has. And they are also unsure if his body could withstand a 2nd transplant. The antibiotics he has been taking are not working for him and Graham is still unable to eat, he finds food repulsive.
After the initial shock and numbness of the day, and with Graham finally able to sleep, I got some sleep. Once our favorite alarm clock of the IV Pump went off at 3:30am (I mean really, can't they just have an alarm go off in the nurse's station!) I found my optimism.
1. They started Graham on a new medicine that is supposed to jumpstart an appetite. This will hopefully get him eating again and will help bring his health back up to a strong fighting mode.
2. They have told us that a port should not be used until it has cured for 2 weeks. It has only been 4 days, a far cry from 14 days, but his Doctors will be speaking with the Bone Marrow Doctors to see if this is that necessary. I have been comparing this to the 30 minute no swim rule after you eat. Just an ol' wives tale, right? If it isn't necessary, they can start Photopheresis ASAP and give his body a chance to stop the rejection. This step in itself is what we have been holding on to. This can stop his decline and bring him back to a life he can live. He can go home and work, play, shop for shoes (his favorite), and do anything else he can/wants. This is not his first rodeo with low lung functions.
3. They have switched up his IV Antibiotics - hopefully these work!
4. They are running the remainder of the "Transplant Work-up" tests to finalize if transplant is an option. I briefly thought about doing one of the tests for him - I'll pass with flying colors - but didn't. Again, I find hope that they will see he's fine and able to transplant him if #s 1-3 do not work.
Oddly enough, he was in no pain last night. First day in a long time without massive pain. But he was uncomfortable. No matter how he situated himself, he felt claustrophobic, stressed, and restless. But he did eventually go to sleep. And that gives me hope that today will be a much better day.
***I struggled with this post. His wishes are that I not share this news with many people. He does not want anyone believing that he will not return to his life outside of this hospital. He fully plans on regaining his life.
Yesterday we did not receive good news. At this point in time, the Doctors do not believe there is anything they can do for Graham. They are unsure if the Photopheresis will be effective on the type of aggressive and quick rejection that he has. And they are also unsure if his body could withstand a 2nd transplant. The antibiotics he has been taking are not working for him and Graham is still unable to eat, he finds food repulsive.
After the initial shock and numbness of the day, and with Graham finally able to sleep, I got some sleep. Once our favorite alarm clock of the IV Pump went off at 3:30am (I mean really, can't they just have an alarm go off in the nurse's station!) I found my optimism.
1. They started Graham on a new medicine that is supposed to jumpstart an appetite. This will hopefully get him eating again and will help bring his health back up to a strong fighting mode.
2. They have told us that a port should not be used until it has cured for 2 weeks. It has only been 4 days, a far cry from 14 days, but his Doctors will be speaking with the Bone Marrow Doctors to see if this is that necessary. I have been comparing this to the 30 minute no swim rule after you eat. Just an ol' wives tale, right? If it isn't necessary, they can start Photopheresis ASAP and give his body a chance to stop the rejection. This step in itself is what we have been holding on to. This can stop his decline and bring him back to a life he can live. He can go home and work, play, shop for shoes (his favorite), and do anything else he can/wants. This is not his first rodeo with low lung functions.
3. They have switched up his IV Antibiotics - hopefully these work!
4. They are running the remainder of the "Transplant Work-up" tests to finalize if transplant is an option. I briefly thought about doing one of the tests for him - I'll pass with flying colors - but didn't. Again, I find hope that they will see he's fine and able to transplant him if #s 1-3 do not work.
Oddly enough, he was in no pain last night. First day in a long time without massive pain. But he was uncomfortable. No matter how he situated himself, he felt claustrophobic, stressed, and restless. But he did eventually go to sleep. And that gives me hope that today will be a much better day.
***I struggled with this post. His wishes are that I not share this news with many people. He does not want anyone believing that he will not return to his life outside of this hospital. He fully plans on regaining his life.
Monday, September 7, 2015
Coexisting
A dear friend brought something, that I've never thought about, to my attention. He said, "He means a lot to so many people. He won't give up."
We have been extremely blessed to have so many friends from all different walks of life, beliefs, and faiths. No matter where we are in this world, people gravitate towards Graham and become instant friends (or what he calls you "buddies"). They are imprinted on our lives and hearts. We probably do not deserve this, but we have it. We are pretty damn lucky. The term "COEXIST" has always meant something to us because of all of you. We fully value the Freedom of Religion Amendment. We choose to be Christians and believe in the Father, the Son and the Holy Spirit; but we also love the fact that we get to learn about all the other beliefs and religions everyone else has. One thing I have learned is that we all have one common act: prayer. Call it what you will - prayer, meditation, "thinking of you(s)" or "how can we help(s)" but if someone were to do any of these acts, your God, our God hears it. And He hears just how important someone is and just how much this person is meant to be on this Earth.
I am a firm believer in prayer. I fully believe Graham has been saved on 2 occasions now because of it...Transplant 5 years ago and last Friday. Both times, he was dying and might have been slated to leave this Earth. But both times we have been blessed by all of your kind thoughts, prayers and meditation. Thank you! I am completely indebted to you. I pray for you even when you are not hurting. Thank you for imprinting on our lives and being a part of us.
I believe Graham has more important things to do in this world. Meet more people and teach those who suffer from Cystic Fibrosis that there is hope for a full life.
As for an update on his health: his body is still aching from Friday's events. His new port is still sore so it's hard for him to move around. His jaw is now aching from being intubated and he has a migraine type headache that won't go away. He still has no appetite and has barely eaten a thing since last Tuesday - I can only imagine that this is making him weaker and weaker. But he is still fighting. After all he has all of you and his little family, and that is worth the fight.
We love you :)
We have been extremely blessed to have so many friends from all different walks of life, beliefs, and faiths. No matter where we are in this world, people gravitate towards Graham and become instant friends (or what he calls you "buddies"). They are imprinted on our lives and hearts. We probably do not deserve this, but we have it. We are pretty damn lucky. The term "COEXIST" has always meant something to us because of all of you. We fully value the Freedom of Religion Amendment. We choose to be Christians and believe in the Father, the Son and the Holy Spirit; but we also love the fact that we get to learn about all the other beliefs and religions everyone else has. One thing I have learned is that we all have one common act: prayer. Call it what you will - prayer, meditation, "thinking of you(s)" or "how can we help(s)" but if someone were to do any of these acts, your God, our God hears it. And He hears just how important someone is and just how much this person is meant to be on this Earth.
I am a firm believer in prayer. I fully believe Graham has been saved on 2 occasions now because of it...Transplant 5 years ago and last Friday. Both times, he was dying and might have been slated to leave this Earth. But both times we have been blessed by all of your kind thoughts, prayers and meditation. Thank you! I am completely indebted to you. I pray for you even when you are not hurting. Thank you for imprinting on our lives and being a part of us.
I believe Graham has more important things to do in this world. Meet more people and teach those who suffer from Cystic Fibrosis that there is hope for a full life.
As for an update on his health: his body is still aching from Friday's events. His new port is still sore so it's hard for him to move around. His jaw is now aching from being intubated and he has a migraine type headache that won't go away. He still has no appetite and has barely eaten a thing since last Tuesday - I can only imagine that this is making him weaker and weaker. But he is still fighting. After all he has all of you and his little family, and that is worth the fight.
We love you :)
Sunday, September 6, 2015
Hopefully just tired
Graham has barely improved throughout the day. The place where they switched out his old catheter and medi-port with his new catheter and dual Vortex port is very tender. When he moves or coughs, it hurts. It is hard for him to sit up or get up. His lungs and throat are so beat up from being intubated. It hurts to eat or talk. He is also so exhausted- mentally and physically.
Unfortunately Jordan was unable to come up and see her Daddy. She is VERY jealous of Graham's parents and me. She misses him so badly. She keeps reiterating to me that it's BEEN 4 DAYS MOMMY since she's seen him. Hopefully sweet girl, you may come tomorrow.
Thank you again for all the continued support and prayers. We love you all dearly!
Unfortunately Jordan was unable to come up and see her Daddy. She is VERY jealous of Graham's parents and me. She misses him so badly. She keeps reiterating to me that it's BEEN 4 DAYS MOMMY since she's seen him. Hopefully sweet girl, you may come tomorrow.
Thank you again for all the continued support and prayers. We love you all dearly!
Out of ICU, but rough morning...
Apparently a lovely little ICU procedure is waking a resting patient, who just went through hell, and making them sit up in a chair at 5:45am. And when asked, "It's just how we do things." I do not understand this.
But his stats look really good, he's breathing great and his heart rate and blood pressure are normal. So he is OUT OF ICU (!!!!) and in a regular room. So happy that things are starting to improve and hopefully a visit from Jordan later will be just the medicine he needs.
He is not feeling well at all however. Graham, who knows his body very well, is struggling this morning. He feels so bad and he doesn't know what it is. He can't tell if he hurts or if it's a lung thing or what. This frustrates him. Hopefully he is just exhausted and needs rest. He just now got to sleep, so I stole his phone and I'm trying to tiptoe and be silent. Maybe a nap will make him feel better.
I will be tackling nurses and tech's who try to come in and wake him up. I will channel my inner Ronda Rousey.
But his stats look really good, he's breathing great and his heart rate and blood pressure are normal. So he is OUT OF ICU (!!!!) and in a regular room. So happy that things are starting to improve and hopefully a visit from Jordan later will be just the medicine he needs.
He is not feeling well at all however. Graham, who knows his body very well, is struggling this morning. He feels so bad and he doesn't know what it is. He can't tell if he hurts or if it's a lung thing or what. This frustrates him. Hopefully he is just exhausted and needs rest. He just now got to sleep, so I stole his phone and I'm trying to tiptoe and be silent. Maybe a nap will make him feel better.
I will be tackling nurses and tech's who try to come in and wake him up. I will channel my inner Ronda Rousey.
Saturday, September 5, 2015
Just Happy to be Alive
I can't say it enough, today is a great day. Thank you Heavenly Father for the blessings you have given us today. Graham has ALWAYS appreciated everyday he has been alive and is very grateful for his lungs and new lease on life. However, I don't know if I have ever seen him more happy to be alive than he is today. The man cannot stop smiling (neither can I).
He sat up for many hours today, doing his breath exercises, coughing with his heart pillow, and talking, talking, talking, joking, laughing, talking, joking....and he is now very tired, with a happy sore throat. He is able to "eat" for the first time since Tuesday evening. They brought him a nice liquid diet tray with Jello, Dr. Pepper, and chicken broth. He took one sip of the broth and "What the HECK is this? Cause this is NOT broth." Unfortunately a friend and I were just leaving, so we ran faster laughing. Hehehe
We are settling in to watch the Longhorns play. We love you all - HOOK 'EM!
He sat up for many hours today, doing his breath exercises, coughing with his heart pillow, and talking, talking, talking, joking, laughing, talking, joking....and he is now very tired, with a happy sore throat. He is able to "eat" for the first time since Tuesday evening. They brought him a nice liquid diet tray with Jello, Dr. Pepper, and chicken broth. He took one sip of the broth and "What the HECK is this? Cause this is NOT broth." Unfortunately a friend and I were just leaving, so we ran faster laughing. Hehehe
We are settling in to watch the Longhorns play. We love you all - HOOK 'EM!
Strongest Fighter EVER!!!!
To all of you who prayed, THANK YOU! God has definitely answered...Graham woke up this morning (victory #1) and was able to write: "What the fuck happened?" Sorry for the profanity, but I feel the need to include it all :)
The nurse was able to explain his night to him, he asked for Sports Center, then went back to bed. They continued his anesthesia but wanted to start reducing the amount of "work" the vent was actually doing. Graham responded so well and so quick, by 10:55 THEY PULLED THE VENT (victory #2)!!!!!!! And then he spoke to me (victory #3). I can't tell you how happy this made me. I love this man's voice and I got to hear it again. And not only hear it, his humor and personality were all back. Not the scared, breathless sick man I've been seeing the past 48 hours, but the strong, funny man I've grown to need around.
He has recollection of most of his day yesterday. In his heart of hearts, when he hugged and kissed his mother and I goodbye at the OR, he believed he would never wake up and see us or Jordan again. He woke up so pleasantly shocked that he was alive! He has all the same questions we do - how do you go into a simple procedure and end up in the ICU on a ventilator? Who knows. But he looks so good! He has not looked this well in over a week. Mind you, he's still not well, but we are FINALLY looking a little up.
He is very anxious to get back up to the 10th floor. This means he gets to see our girl. He wants to hug and kiss and soak her all in. And I can't wait to watch. He will be in ICU for at least another day. They still need to monitor his breathing, not wanting him to revert back to how he was yesterday morning. And who knows if he'll get to come home in any near future; but we get another moment with our Super Man and my heart is happy.
AND I've already told him he IS NOT allowed to pull that stunt again!
The nurse was able to explain his night to him, he asked for Sports Center, then went back to bed. They continued his anesthesia but wanted to start reducing the amount of "work" the vent was actually doing. Graham responded so well and so quick, by 10:55 THEY PULLED THE VENT (victory #2)!!!!!!! And then he spoke to me (victory #3). I can't tell you how happy this made me. I love this man's voice and I got to hear it again. And not only hear it, his humor and personality were all back. Not the scared, breathless sick man I've been seeing the past 48 hours, but the strong, funny man I've grown to need around.
He has recollection of most of his day yesterday. In his heart of hearts, when he hugged and kissed his mother and I goodbye at the OR, he believed he would never wake up and see us or Jordan again. He woke up so pleasantly shocked that he was alive! He has all the same questions we do - how do you go into a simple procedure and end up in the ICU on a ventilator? Who knows. But he looks so good! He has not looked this well in over a week. Mind you, he's still not well, but we are FINALLY looking a little up.
He is very anxious to get back up to the 10th floor. This means he gets to see our girl. He wants to hug and kiss and soak her all in. And I can't wait to watch. He will be in ICU for at least another day. They still need to monitor his breathing, not wanting him to revert back to how he was yesterday morning. And who knows if he'll get to come home in any near future; but we get another moment with our Super Man and my heart is happy.
AND I've already told him he IS NOT allowed to pull that stunt again!
Friday, September 4, 2015
Today was not good...
Graham has been short of breath with a high heart rate since last night. He has been masked with high oxygen and unable to speak. With the procedure today, there were worried they would not be able to complete it because he could not lay flat.
He went down at 10:00am and they were unable to attempt putting the catheter in until 11:45am. They soon found that he had full blockage (they kind of expected this) and would need to replace his current port with a double Vortex Port. This would be so he could receive IVs and do a Photopheresis treatment at the same time. When they went in, because he has had his port for almost 10 years, his body has attached to it. To be able to remove it without damaging the current catheter and vein, they needed to take him to the OR.
He has been on local anesthesia for most of the day. His breathing was so bad they needed to intubate him during the procedure. They did successfully switch out the two ports, but he was unable to breathe on his own.
Graham is now in ICU on a vent. I am scared. I am so scared that I will never be able to speak to my other half again. Graham is one of the strongest and bravest people I know. I know he is putting up a fight and will not give up.
He went down at 10:00am and they were unable to attempt putting the catheter in until 11:45am. They soon found that he had full blockage (they kind of expected this) and would need to replace his current port with a double Vortex Port. This would be so he could receive IVs and do a Photopheresis treatment at the same time. When they went in, because he has had his port for almost 10 years, his body has attached to it. To be able to remove it without damaging the current catheter and vein, they needed to take him to the OR.
He has been on local anesthesia for most of the day. His breathing was so bad they needed to intubate him during the procedure. They did successfully switch out the two ports, but he was unable to breathe on his own.
Graham is now in ICU on a vent. I am scared. I am so scared that I will never be able to speak to my other half again. Graham is one of the strongest and bravest people I know. I know he is putting up a fight and will not give up.
The Infamous Catheter
Catheter: noun cath·e·ter \ˈka-thə-tər, ˈkath-tər\ medical : a thin tube that is put into the body to remove or inject a liquid or to keep a passage open (used for many things...not just the extraction of urine)
To stop the rejection, Graham needs a treatment called Photopheresis. This is where they will cycle out his blood, separate the white blood cells, zap them with a photo thing, and put his blood back in him. This process will help heal the white blood cells so they may help fight the rejection. This treatment has phenomenal results. All he needs to get this started is a catheter to connect to a Vortex port.
The orders were put in a week AFTER the procedure was ok'd by insurance. Instead of asking the referring doctor for clarification on the specific type of port they wanted to use and if they had one, the Interventional Radiology (IR) lab decided to just call a medical supply company to get this port. This medical supply company said it would take 1 WEEK to get to the hospital, then the IR lab could do the procedure Tuesday (Labor Day...no one works). THREE WEEKS AFTER THE ORDERS WERE PUT IN! Meanwhile, Graham's health is fading at a VERY rapid pace.
On Wednesday of this week, Graham had a bronch scheduled with Dr. Rosenblatt. He took one look at Graham and was pissed. No one ever relayed the message that he was as bad off as he was. He was also unaware that IR was dragging their feet with the catheter. So needless to say, S*** hit the fan and Dr. Rosenblatt got things running. He admitted Graham into the hospital and got him on the schedule for Friday for the catheter and port. TADA....Thank you Dr. Rosenblatt, it's why we love you.
To stop the rejection, Graham needs a treatment called Photopheresis. This is where they will cycle out his blood, separate the white blood cells, zap them with a photo thing, and put his blood back in him. This process will help heal the white blood cells so they may help fight the rejection. This treatment has phenomenal results. All he needs to get this started is a catheter to connect to a Vortex port.
The orders were put in a week AFTER the procedure was ok'd by insurance. Instead of asking the referring doctor for clarification on the specific type of port they wanted to use and if they had one, the Interventional Radiology (IR) lab decided to just call a medical supply company to get this port. This medical supply company said it would take 1 WEEK to get to the hospital, then the IR lab could do the procedure Tuesday (Labor Day...no one works). THREE WEEKS AFTER THE ORDERS WERE PUT IN! Meanwhile, Graham's health is fading at a VERY rapid pace.
On Wednesday of this week, Graham had a bronch scheduled with Dr. Rosenblatt. He took one look at Graham and was pissed. No one ever relayed the message that he was as bad off as he was. He was also unaware that IR was dragging their feet with the catheter. So needless to say, S*** hit the fan and Dr. Rosenblatt got things running. He admitted Graham into the hospital and got him on the schedule for Friday for the catheter and port. TADA....Thank you Dr. Rosenblatt, it's why we love you.
Quick Timeline- to catch you up
Since June, Graham has been on a rapid decline. As I said yesterday, he was playing outdoor soccer. He had just signed up for indoor too. Right around Father's Day, he began to feel tight chested. He knew he was going in to see the doctor in a couple of weeks, so he waited it out. Once the appointment came around, they immediately admitted him into the hospital (something that has not happened in such a long time, it caught me off guard) and put a bronchoscopy into the books. This is where they take a camera, along with many other cool tools, shove it down his nose and take a look at his lungs. Graham was able to go home after a day, because this was July 4th weekend, and NO ONE works over July 4th. So at least we got to go celebrate 'MERICA at the Deer Lease with some friends and guns.
Came back for the bronch the next week and the doctor, who I feel the need to say is not his preferred doctor, whom we LOVE, found that he did have an infection and also took a biopsy of his lung. He began IV antibiotics and we thought it was over.
But he kept getting worse.
14 days later we came back to the doctor's office. They ordered another bronch and biopsy. But there was more to it this time. Graham couldn't breathe, he was back on oxygen, it was hard for him to speak, in his heart of hearts, he knew he was dying. BUT NO ONE believed him. They decided to admit him anyways. To find out if one is rejecting or not, the doctors will take a biopsy of the organ, then throw it in a petri dish and watch to see if any cultures pop up. When one feels like they are dying, this wait is excruciating. While waiting on this latest biopsy, we found out the first biopsy came back with signs of chronic rejection. The doctor (who again, is NOT Dr. Rosenblatt - the favorite) believed the chronic was being caused by the infection and if Graham could kick the infection, the chronic would stall. I mentally kick his ass a lot!
But the pain Graham was feeling was not a "chronic rejection" pain, they believed it to be an "acute rejection" that he was going through. The difference between the two: Acute can be treated and fixed with high doses of steroids; Chronic is unfixable, what is done is done to the organ. Since acute can be fixed, the wait was so frustrating. If you can fix his pain and his "dying" why won't you treat it? Stock Answer from NP: We do not want to treat something and might hinder the treatment of something else. One week later we found out it was all worse case scenarios wrapped up into nice package. Graham still had the infection that proved to be a tough little booger (he still has it); he had acute rejection (most likely caused by infection); and he was in chronic rejection. But still the doctor's felt optimistic. Clear up the acute, treat the infection, and this should stall or stop the chronic. YEAAAAA.
But No...I can't put into words what Jordan and I have witnessed over the past 2 weeks since Graham has come home from the latest hospital stay. He went from walking with oxygen, to almost bedridden. He was fighting with all his might to make it to Jordan's first Sting Soccer Game. And he did. We went with several oxygen tanks, a wheel chair, and a Janie (everyone needs one of these - she makes our hearts smile). The OTHER team supplied a quick shade for Graham! Well, we actually know them really well, but still! And he smiled. For 1 whole hour, Graham enjoyed life and it was awesome. But after that hour, Graham crashed fast.
And I realize this is written badly....wine was involved : I
Came back for the bronch the next week and the doctor, who I feel the need to say is not his preferred doctor, whom we LOVE, found that he did have an infection and also took a biopsy of his lung. He began IV antibiotics and we thought it was over.
But he kept getting worse.
14 days later we came back to the doctor's office. They ordered another bronch and biopsy. But there was more to it this time. Graham couldn't breathe, he was back on oxygen, it was hard for him to speak, in his heart of hearts, he knew he was dying. BUT NO ONE believed him. They decided to admit him anyways. To find out if one is rejecting or not, the doctors will take a biopsy of the organ, then throw it in a petri dish and watch to see if any cultures pop up. When one feels like they are dying, this wait is excruciating. While waiting on this latest biopsy, we found out the first biopsy came back with signs of chronic rejection. The doctor (who again, is NOT Dr. Rosenblatt - the favorite) believed the chronic was being caused by the infection and if Graham could kick the infection, the chronic would stall. I mentally kick his ass a lot!
But the pain Graham was feeling was not a "chronic rejection" pain, they believed it to be an "acute rejection" that he was going through. The difference between the two: Acute can be treated and fixed with high doses of steroids; Chronic is unfixable, what is done is done to the organ. Since acute can be fixed, the wait was so frustrating. If you can fix his pain and his "dying" why won't you treat it? Stock Answer from NP: We do not want to treat something and might hinder the treatment of something else. One week later we found out it was all worse case scenarios wrapped up into nice package. Graham still had the infection that proved to be a tough little booger (he still has it); he had acute rejection (most likely caused by infection); and he was in chronic rejection. But still the doctor's felt optimistic. Clear up the acute, treat the infection, and this should stall or stop the chronic. YEAAAAA.
But No...I can't put into words what Jordan and I have witnessed over the past 2 weeks since Graham has come home from the latest hospital stay. He went from walking with oxygen, to almost bedridden. He was fighting with all his might to make it to Jordan's first Sting Soccer Game. And he did. We went with several oxygen tanks, a wheel chair, and a Janie (everyone needs one of these - she makes our hearts smile). The OTHER team supplied a quick shade for Graham! Well, we actually know them really well, but still! And he smiled. For 1 whole hour, Graham enjoyed life and it was awesome. But after that hour, Graham crashed fast.
And I realize this is written badly....wine was involved : I
Thursday, September 3, 2015
Too Soon
Life for the past 5 years has been AWESOME! Just 5 years and 1 week ago, my little family's life changed into a fairytale. Graham, who has Cystic Fibrosis, received a double lung transplant. He had a rough surgery, and fought hard as hell through a year of recovery, but he made it. And there was not 1 day that either of us, especially Graham, took for granted. We were constantly going, not going to let one experience or one memory making event, pass us up. We knew we had a time limit, and we were going to make sure Jordan, our daughter, remembered her father in a good, healthy light.
And now it seems our time is up, but I'm a little selfish, I want it to keep going. It has been way too good. We have more things we want to do - Disney World, Scotland, Jordan's first deer, Graham finally shooting a deer bigger than mine (I don't care if this one happens)...then there is the simpler bucket list items - Jordan's first car, graduation, having her father walk her down the aisle...
Two months ago, Graham was running up and down the soccer field. Today, he is in the hospital, having to wear a mask for oxygen, fighting for his life again. They call it...in rejection. His body is rejecting the lungs that have given us a life we never knew possible.
I am returning to blog to keep those who want to be kept informed, informed. I am also writing to help me get things out of my mind. I like to write, it is very therapeutic for me. And I find that when I write, I stop talking to myself AND I can edit without stuttering through a conversation. You might find out way more than you ever wanted to know about my family and me. I'm so sorry. I do want to write about the good and the bad of this life changing experience we are about to go on.
And now it seems our time is up, but I'm a little selfish, I want it to keep going. It has been way too good. We have more things we want to do - Disney World, Scotland, Jordan's first deer, Graham finally shooting a deer bigger than mine (I don't care if this one happens)...then there is the simpler bucket list items - Jordan's first car, graduation, having her father walk her down the aisle...
Two months ago, Graham was running up and down the soccer field. Today, he is in the hospital, having to wear a mask for oxygen, fighting for his life again. They call it...in rejection. His body is rejecting the lungs that have given us a life we never knew possible.
I am returning to blog to keep those who want to be kept informed, informed. I am also writing to help me get things out of my mind. I like to write, it is very therapeutic for me. And I find that when I write, I stop talking to myself AND I can edit without stuttering through a conversation. You might find out way more than you ever wanted to know about my family and me. I'm so sorry. I do want to write about the good and the bad of this life changing experience we are about to go on.
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